Research

Using Health Administrative Data to Understand and Improve End of Life Care Among Children With Cancer: A Population-Based Cohort and Validation Study

 

Children with cancer often receive high-intensity medical care at the end-of-life (EOL), which may increase already high symptom burdens. The impact of specialized pediatric palliative care (SPPC) services upon the intensity of pediatric EOL care is unknown. While population-based studies are required, the ability of administrative data to accurately identify SPPC involvement is unknown. We will combine population-based administrative and detailed clinical data to determine who receives SPPC and whether SPPC programs impact the kind of EOL care experienced by Ontario children with cancer. We will also validate the ability to identify PC involvement using administrative data, thereby providing an innovative method for future research.

Current Status

Complete

Publications

Kassam, A., Sutradhar, R., Widger, K., Rapoport, A., Pole, J., Nelson, K., Wolfe, J., Earle, C., & Gupta, S. (2016). Predictors of and trends in high-intensity end-of-life care among children with cancer: A population-based study using health services data. Journal of Clinical Oncology, 35(2), 236-242. doi:10.1200/JCO2016.68.8283

Widger, K., Vadeboncoeur, C., Zeltzer, S., Liu, Y., Kassam, A., Sutradhar, R., Rapoport, A., Nelson, K., Wolfe, J., Earle, C., Pole, J., Gupta, S. (2017). The validity of using health administrative data to identify the involvement of specialized pediatric palliative care services in children with cancer in Ontario, Canada. Journal of Palliative Medicine, Early online doi: 10.1089/jpm.2017.0028

Widger, K., Sutradhar, R., Rapoport, A., Vadeboncoeur, C., Zeltzer, S., Kassam, A., Nelson, K., Liu, Y., Wolfe, J., Earle, C., Pole, J., Gupta, S. (2018). Predictors of specialized pediatric palliative care involvement and impact on patterns of end-of-life care in children with cancer. Journal of Clinical Oncology, doi: 10.1200/JCO.2017.75.6312. NOTE: This article was selected by JCO for an invited commentary and a JCO podcast session, available here

Poster Presentations

Widger, K., Sutradhar, R., Rapoport, A., Vadeboncoeur, C., Zeltzer, S., Kassam, A., Nelson, K., Liu, Y., Wolfe, J., Earle, C., Pole, J., & Gupta, S. (September 2017) Predictors of specialized pediatric palliative care involvement and impact on patterns of end-of-life care in children with cancer [Poster]. Canadian Hospice Palliative Care Association Annual Conference Ottawa Canada.

End of Grant Meeting Report

We hosted a one-day stakeholder meeting at the Hospital for Sick Children in October 2017 to share the key findings from our study and gain perspectives on our findings from health care providers, researchers, parents of children living with or who died from cancer, and representatives from non-profit organizations focused on improving health care. Access End of Grant Meeting Report.

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Team Members

Kimberley Widger (Co-Prinicipal Investigator) Sumit Gupta (Co-Prinicipal Investigator) Craig Earle Alisha Kassam Katherine Nelson Jason Pole Joanne Wolfe Adam Rapoport

Funding Source

Pitblado Clinical Grant Competition, Garron Family Cancer Centre, Hospital for Sick Children

Bloomberg Faculty Pilot Research Grant Program